UPDATE: I think I have the strongest clue yet as to my continued fatigue crashes/PEM after a lot of activity. Granted, this may or may not explain why I started this string in the first place--crashing in the afternoon after a day of rest. I do think that was a cortisol issue, as I had high cortisol at night then, which in me, tends to lower cortisol in the afternoon and cause fatigue.
But here's what I think may be going on with my PEM issues after activity (which doesn't fit having ME/CFS). A few months ago, I did a stool test. Everything looked fine...except that I had an intermediate level of carbs in my stool that shouldn't have been there like that. They weren't being digested. And there was no explanation from the test. I kept thinking about that fact, and it's hard to find information on the internet. I even got amylase, the enzyme to break down carbs.
But it dawned on me, from crashing again with PEM after a day of activity, that perhaps my Amylase levels are just low enough that I need to take Amylase for
ANY kind of carbs I eat, not just one time. I started that two days ago. Even if I took one bite of a carb or starch, even if the carb or starch was a small amountt, I popped the Amylase. And I DID notice my energy lasted longer on the first two days I was more committed like that.
Now granted, I did still crash with fatigue by 4 pm each of the two days. But I don't normally go that long before PEM. And it wasn't the typical crash that would last days on end.
I think studied these steps of digestion of carbs:
1. Saliva releases amylase as you chew
2. Stomach blocks any more breakdown due to acid
3. In the duodenum (small intestine), pancreatic juices are released containing amylase which breaks down starch and glycogen into maltose, a disaccharide
4. Disaccharides broken down to monosaccharides (simple sugars) by maltases, sucroses, and lactases
5. Maltase breaks down maltose into glucose
6. Other disaccharides (sucrose and lactose) broken down by sucrase and lactase
7. Monosaccharides (glucose) used for energy
As I study that, I'm suspicious that my digestive breakdown of starches and carbs is very inadequate after #3. Because in #7 it's mentioned that monosaccharides, which are in #4, are used for energy...unless my problem is in #5--maltase.
I looked at my AMY genes in 23andme.com and out of 18 possible mutations, three had no mutation, ONE was heterozygous, and 13 has NO DATA. So if I'm to find out if I have an amylase mutation, it will take a specialist in genetic testing?
So here's where I'd like to bring in
@BeADocToGoTo1 who discovered his fatigue was related to a very serious lack of enzymes via his pancreas:
1) Have you heard of someone only having problems with the release of Amylase? Now an Organic Acids Test (OAT) a few years ago did imply I'm not breaking down protein or fat well, but that hasn't been the case with the latest OAT. And by the way, I'm on bile due to poor release via blockages in the bile duct (polyps). And bile resolved the fat breakdown issue well.
2) If it is just a poor release of amylase, does it simply take time to see energy improvements? Am I expecting too much that only two days have gone by and though I lasted much longer due to the amylase, I still somewhat crash, even if not crashes that last days on end.
I do take digestive enzymes now for EVERY meal, plus the amylase as of this week with every single amount of carbs or starches.